Self neglect

Hi Jenny...

i'm going try try to answer with the caveat  that I'm currently a bit drunk and I haven't read any of the other replies, so take it for what you will.

I go through periods of self destruction and self neglect. I have to remind myself to wash and brush my teeth etc. And I am a perfectly functional amd 'successful' human being. I will only shower when I have to go to work, or when I start feeling uncomfortable or itchy/stinky. I can go for days or weeks without it bothering me personally, because I don't notice. When I finally can smell myself. which is probably too late, I get around to doing something about it.

Only going to work gives me the impulse to not be a stinky mess. I simply don't think about these things and I don't notice, until I notice.

I have a skin condition, made worse by lack of washing and shaving, and even that doesn't always motivate me to keep control of it.  But I become annoyed, irritable etc when it gets out of control. It gets worse when I'm feeling down or unmotivated, which makes me down and more unmotivated.

I can better control and organise these things when I have a better sense of personal interests and motivation, when I can become more than my own interests, when I can externalise myself. It's difficult to explain. But I think it's about finding a spark. an interest and excitement outside of oneself, some kind of external motivation.

This can be quite sporadic, and is not externally motivated. It comes from within, but needs some form of external impetus.

Or some pride in oneself, whatever that might mean.

That probably doesn't help in any way whatsoever. But it's about finding a spark to engage with the external world.

If you don't mind me asking, was there anything in particular that either caused or helped with this?  I guess, though, that there can be lots of factors having a cumulative effect.  

In our situation I think that, given the severity of the mental health issues, hygiene becomes a low priority.  It really bothers me but I don't think it can be addressed on its own.  This makes it feel more intractable because burnout, withdrawal and almost total non engagement hardly allow for a way in.  

After I graduated, in 2001, I let myself go. Then, I got a Civil Service job in 2004. However, I lost that job due to poor personal hygiene. 

I was a mess back then. 

Yes, I feel loath to do this, for fear of making things worse, but there are few options in this situation.  The problem would be that it might erode trust which, after so many setbacks with the "help" we sought and persuaded our son to try, is already quite low.  

I'm not even sure I could get him to any DWP appointments, as and when they decide they need to do this.  

I often feel very alone in seeking help for this and services just dry up for those who cannot seek support on their own behalf.  

The only way I can reason (If you can call it that) is by with holding my sons PIP money, which I absolutely hate doing as he has nothing but this,  to fund the little but of  enjoyment.. to look forward to from one day to the next.  

My son has now stopped his medication for anxiety, as he thinks this is giving him diarrhea, he has just been diagnosed with a eating disorder... 

I think I am caught in a loop here.  

Q:. How do you promote engagement in someone who won't or even can't engage?

A:. (As the professionals have told me in the past)  You can't because they won't engage.  Come back when he's ready.  

If we stay as we are then I'm not sure he'll ever be ready though!

I can try to identify the mindset behind all of this and I think it's largely fear and trauma-based.  I can understand that and also relate to it to an extent.  The world and other people can be scary and the demands overwhelming.  To me that indicates that removing these as far as possible should be helpful.  I honestly thought that he would gradually come back out of his shell.  

Perhaps we're not getting the environment right.  Perhaps we don't feel safe enough or our vibe is too negative.  We've worked on ourselves though, and the environment here is just about as stress free as possible.  

I'm getting very worried that the rest of our lives might just be a continuation of this.  Yes, people have told me that, "This too will pass".  But after 10 years of this I suspect it might only pass when we pass!

Anyone else have a mucky, hermit relative?  Any success in changing things?  I'm frankly out of my depth and I actually thought I was quite a deep person!  

How do families cope?

Many thanks.  Our son hasn't had any sensory profiling done, nor even a proper autism assessment as, after being discharged from mental health services (on the basis that there was no evidence of mental illness, just of Asperger's) he refused to see any more professionals.  Basically the Autism Team came in the front door and he legged it out of the back door, protesting that "I don't have autism!" He's an adult and they're forced to respect his wishes.  

The difficulty now would be in encouraging him to re-engage, especially as the years with mental health services were so damaging and the suggestion of autism only came at the very end (and after loads of failed attempts to medicate and therapise him, all of which he was against but which were forced upon him to prevent hospitalisation).  

Anything we can now do would have to come through us and be suggested, very gently, as and when he is open to new ideas.  And quite often I am left feeling like an ogre because when I go into a room, he tries to exit as quickly as possible.  Contact seems to panic him and I don't think we've been able to rebuild trust after all of those mental health appointments.  Now he says,"No" automatically to anything we suggest so we have to cautiously seed ideas and hope that some will take root.  They might not.   

I'm open to buying in services.  I'm basically so desperate that I'd remortgage the house for anything expensive if I felt it might help.    But we'd need some buy-in from him and this is exceedingly difficult to generate.  I basically don't know how to promote engagement although what we're doing is:-

- maintaining a calm, cosy environment

- providing foodstuffs he'll appreciate (I often "speak" to him through food)

- making only few demands (he probably has a PDA profile)

- being available, should he wish to discuss or ask for anything

- leaving him with open ended offers of whatever therapy or support he might choose

- generally remaining person- centred and respecting his choices.

I had hoped that this, plus my counselling training, would put us in a much stronger position.  Unfortunately, while it might have helped to prevent things getting worse, we've seen no improvements and I've yet to get to know my own son as an adult (the issues started when he was 15/16 and he's now 27).  

As it stands I would like a neurodivergent practitioner of some experience to give me some robust advice and guidance (NB. Not so much counselling as the provision of an empathic, understanding relationship without any guidance just leaves me feeling short-changed.  Giving me space and empathy doesn't enable me to come up with my own solutions - they're just not in me to be called upon).  So yes.  Coaching, advice and guidance is what i'm seeking now.  

Yes, I have learnt to feel that the whole concept of readiness is being used to keep us from getting any help.  Likewise "insight", as if this is going to magically materialise from the depths of a person's psyche. 

We don't have any choice any more though, as our son refuses to engage altogether and services aren't geared up to promote engagement. 

Of course, promoting real engagement would take time to focus on building a therapeutic relationship and individually tailor any support, which might just prove too expensive.  Sigh.. 

Oh my gosh this sound just like my son.  He is 22 years old but has reasoning of 15years.  I have tried to get him help from different services, as he has no social interaction outside of the house.. and he point blank refuses..  I too get told, "contact us again when your son is ready"  I don't think he will EVER be ready as he is so content being in his comfort zone.. 

Dear Jenny Butterfly I am so sorry to hear about the difficulties you are facing.

It echo's some of my family's situation and at the very least I hope you find comfort in that.

Forgive me if you have tried the suggestions I am making. They have made various degrees of difference for our son depending on his current state of mind and his OCD prevalence at the time.

Our son found an outlet through a love of music and has studied that online and virtually. The recent pandemic has bought some pluses in that education online has opened up considerably. If your son has a passion for gaming could you enrol him on a virtual online course related to gaming which may involve interacting with people via his computer but may be a good start. Forgive me I am not sure of his age so suitability of that suggestion.

The sensory approach to bathing works or helps to varying degrees, I understand. You may have done this already but I paid for a full sensory profile to find out specifically what my son's sensory difficulties were. It involved a series of physical tests that were not unpleasant for him and produced a report. The major gold nuggets we found were that he could tolerate baths much more easily than showers so I managed to persuade him to have a bath on a more regular basis now. He also finds white noise comforting. Strangely enough an extractor fan is very similar to white noise but he has a machine to produce this now and takes it into the bathroom with him,

It sounds as it feels as if you have not made any progress at all and I completely understand that feeling but I am sure with the determination I am seeing in your writing you will. I do hope that the community's  messages and ideas can give you a little understanding and support and my greatest wish for you some ideas that make a difference.

Happy to continue to discuss/chat on this forum to try and find something to help

Thanks H.  I'm afraid I feel walled off from my former friends, counselling contacts and supervisors with this situation.  It's as if we inhabit a world apart because I know none of them have faced this kind of situation.  They're also non autistic, as I thought I was until the last few years.  Although I know they're no strangers to suffering (the human condition being what it is), this feels like an unusual type and they can't say, "Oh, when we had this problem, what we did was...", which is what I really want to hear.  Maybe I need to get myself an ND supervisor - that's certainly a possibility.  

I do hear lots about the benefits of joining the autistic community, but as things stand this is only online and I need to learn how to join my fellow autistics and make friends locally.  This is another reason why I felt so disappointed when there were no other autistic parents in the groups I joined.  

I think my counselling training also removes some options for me, because it feels as though I can detect the gears turning in the listener's mind, and I know that, just as I am myself as a parent and as I would feel listening to me, they are out of their depth.  

Hubby is supportive, yes, and I do value that but as the years go by he's becoming more depressed himself so has little to offer - not with any conviction anyway.  

I think that, overall, I just need to know that it's possible to overcome this and return, as a family, to getting more shared pleasure in life.  A cure for my physical health condition would help too, no doubt, and in that case support in most of its forms has started to ring hollow after a couple of decades with no medical breakthroughs.  I had sort of told myself, in order to survive, that joining these groups was only temporary while researchers came up with something.  And they haven't.  And I haven't either.  

It may be that I only have another decade left and I sorely need it to be filled with good family times, love and laughter.  If my parenting has been good, then I need to see evidence of this manifested in our lives.  But unfortunately the correlation doesn't seem to hold and my expectation that is might has proved unfounded.  It helps, yes, but it doesn't resolve.

My wider family.  I'm not sure.  They surely empathise and would do anything within their power.  But finding a solution isn't within their power and I'm left knowing that they are getting on with their lives (including getting on with all those milestones on life to which our access has been denied) while we languish here.  

Sorry to feel so negative.  And thank you for responding, especially when the issues feel so intractable. 

I'm guess this means I'm not quite cried out for the day yet.  And tomorrow will probably feel better.

Jenny Butterfly said:

just that being in a small room 24/7  in a scruffy, mucky state is not what anyone envisages for their child).  

That is totally understandable feeling the way you to with the circumstances that you describe.  I think with the best of intentions other who are not in the constant monotony of it will inadvertently put their foot in it as they do not know the level of support you are trying and have tried to provide to your son to no avail.  Do you have any respite at all? Any space for you? Does your husband give you a hug and cry with you when you are having the harder day? Do you have friends who will just listen and be there? I phone samaritans a lot.  I know they can't solve things and "just" listen but the very fact they are volunteering to do that helps me feel loved and supported.  

Jenny Butterfly said:

I'm not sure how capable I am of parenting in this situation, particularly as I become older and more ill.

You mentioned how capable you are of parenting.  I think you sound like you are a very giving parent and trying your best.  Do you get help and support from friends and family for being ill yourself?

Unfortunately already tried some years ago.  He is very much of the belief that anyone who doesn't accept him as he is, isn't worth getting to know.  Plus, of course, having dropped out of college twice some years ago and continuing, over a period of months, to refuse to go out with friends when they called round, he now has nobody outside the family and never joins anything outside the home so that new contacts could be made.  

Total withdrawal.  Living like a hermit.  Afraid of others.  Anxious and extremely avoidant.  Probably traumatised by experiences at school and college (including bullying).  I don't know what to do but as each year passes it feels more and more like an unreal nightmare.

Yes, I do feel dedicated.  There is, however, also an angry, screaming parent inside me and she has to take her feelings elsewhere to work through them (picture me doing Tae Kwondo punches in the garden, then dissolving into tears). 

I'm not sure how capable I am of parenting in this situation, particularly as I become older and more ill.  And also as I inevitably notice other family members of the same age moving out, getting jobs and planning on starting families.  (Not that any of this conventional stuff is compulsory or expected - just that being in a small room 24/7  in a scruffy, mucky state is not what anyone envisages for their child).  

The golden rule seems to be that nothing helps.  Pulling back, occasional nudging, holding space, remaining very gentle and person- centred.  All can be positive but nothing changes.  

Radical acceptance was mentioned by one caseworker and I'm afraid that sent me into punching mode too, thankfully only in my mind's eye.  

Yes, some days feel worse than others, that's true.  Today I need to cry it out before I make myself available to others.  

Tell him that girls won't fancy him unless he changes his ways.

Thanks PersonAnon. That is still appreciated.  

Jenny Butterfly said:

I'm not sure about the back burner for hygiene.  Lapses of a few days to maybe a couple of weeks, depending upon needs and mental state, seem reasonable to me.  A situation lasting months and years does not. 

Yes, there is a level at which it's acceptable.

I wonder if you drew back from your son making less interaction if that would help?  It sounds like you are trying everything though and have undoubtedly tried that too.

I wish I had a magic wand that I could make it all better for you as I can hear the angst in your post.  If anything, I know that the degrees of depression and isolation that I have felt do change in intensity.  That is what I tell myself when I think I can't take it anymore. 

It must be very upsetting for you to not have the relationship with your son that you wanted and to want to make it better but having all attempts seem unsuccessful.

There is one positive I see in all that you are going through.  No matter what happens.  You are a very dedicated mother who is trying to communicate her love to her son.  That in itself is precious.  

This sounds awfully trite, and I hope you won’t take it that way, but I feel so much for you.  I can’t do much, in practical terms, but offer to be around, on here, when you need to talk to someone. 

I'm in a couple of local support groups for parents of adult autistics, but even there our issues aren't common.  For example, many of the group members have adult offspring who also have learning disabilities, who were identified very early in life and who are just seeking the continuation or improvement of services.  And, strangely to me, it's always the non autistic parent who attends so this reduces the commonality too.

I do buy in what I believe are some very good autistic-led courses and webinars, but even within these, the issues around burnout and poor hygiene are treated as more episodic or resolvable via consideration of sensory factors and the environment.   It may, of course, be that that's the case but there's no advice on how to cope when it's taking years and those years are really quite important years in a young person's life that they won't be getting back.  

My last round of psychotherapy (cognitive analytic therapy) concluded with a formulation of my issues but referred me back to the GP with the observation that my preoccupation with our son's issues was hindering my own therapy and limiting what could be done.  

So now what I'm wanting is some 1:1 coaching/supervision-type counselling (preferably from a neurodivergent practitioner) that can focus on family dynamics and what we CAN do to improve things.  

Other than that, the obstacle seems to be that I'm seeking help for my son's issues rather than my own, although I would argue that when one person is in this state, it inevitably affects the whole family.  It seems that 1:1 help is for individuals, not families, unless, of course, it's families with younger children (under 18).  Our youngest age of diagnosis is 26.  

OK.  Do you actually have any support at all, at the moment? Or are you entirely left on your own?